My sister, Kelly Martineau, is a warrior, the kind you pray is on your team when you are going into battle. Lucky for her son, Tucker, that's who he got for a mom. Tucker's life has been a continual battle and Kelly wages wars to save him. It started with early intervention to treat autism, two years of infusion treatment at the Maine Children's Cancer Program, justice attorneys, advocates, class action law suits, she fought for her children and helped yours along the way. Now she's faced with another fight - one that could entirely change the quality of his life - and one that she cannot wage without your help.
Since the age of 2, Tucker has been in palliative care, when he was diagnosed with a Mitochondrial disease. Palliative care is medical speak for "it's terminal, but we aren't giving up" and is somewhere between wellness and hospice. He's not well, but by the grace of God, he's not dying.
Tucker doesn’t eat. It hurts him. He’s terrified of food. At several points in his 9 years he’s gone months with no solid foods. His first 30+ day period was at the age of 2. It was terrifying for his mother. This prompted his lead physician, Dr. Tim Buie of Massachusetts General Hospital, to surgically implant a feeding tube responsible for administering life sustaining medication and food when he is unable to eat. Tucker does not eat more than a couple of foods intermittently even when he is able to tolerate solid foods.
There IS good news! The experts at the Marcus Autism Center at Emory University in Atlanta, GA http://www.marcus.org/Clinical-Services/Feeding offer an intensive, eight week feeding program focused on Tucker's food behaviors, texture aversions, and emotional reactions to food. Tucker is not a picky eater, he is absolutely terrified to eat. For the first time ever, Tucker has a desire to learn how to eat! HE wants to overcome his fear! Not only that, a recent exploratory procedure indicated that there is no medical explanation for his current episode of refusal. Tucker has been accepted into the program and the insurance has approved his admission!
This is LIFE CHANGING, but it’s also extremely expensive. Kelly will have out-of-pocket expenses for 8 weeks of housing in Atlanta (no charitable accommodations can take them), transportation (her current vehicle won’t make the trip), meals, a day program for her daughter Ava, and $2,500 in non-reimbursable medical expenses . In addition, the home she rents is being sold and all of her belongings will be put into storage for her to deal with when she returns from Atlanta, in mid September.
Thank you for your love, prayers, hope, help, and support!
Lori Fakler
xoxo
Since the age of 2, Tucker has been in palliative care, when he was diagnosed with a Mitochondrial disease. Palliative care is medical speak for "it's terminal, but we aren't giving up" and is somewhere between wellness and hospice. He's not well, but by the grace of God, he's not dying.
Tucker doesn’t eat. It hurts him. He’s terrified of food. At several points in his 9 years he’s gone months with no solid foods. His first 30+ day period was at the age of 2. It was terrifying for his mother. This prompted his lead physician, Dr. Tim Buie of Massachusetts General Hospital, to surgically implant a feeding tube responsible for administering life sustaining medication and food when he is unable to eat. Tucker does not eat more than a couple of foods intermittently even when he is able to tolerate solid foods.
There IS good news! The experts at the Marcus Autism Center at Emory University in Atlanta, GA http://www.marcus.org/Clinical-Services/Feeding offer an intensive, eight week feeding program focused on Tucker's food behaviors, texture aversions, and emotional reactions to food. Tucker is not a picky eater, he is absolutely terrified to eat. For the first time ever, Tucker has a desire to learn how to eat! HE wants to overcome his fear! Not only that, a recent exploratory procedure indicated that there is no medical explanation for his current episode of refusal. Tucker has been accepted into the program and the insurance has approved his admission!
This is LIFE CHANGING, but it’s also extremely expensive. Kelly will have out-of-pocket expenses for 8 weeks of housing in Atlanta (no charitable accommodations can take them), transportation (her current vehicle won’t make the trip), meals, a day program for her daughter Ava, and $2,500 in non-reimbursable medical expenses . In addition, the home she rents is being sold and all of her belongings will be put into storage for her to deal with when she returns from Atlanta, in mid September.
Thank you for your love, prayers, hope, help, and support!
Lori Fakler
xoxo